12/10/2015

NOMBRE:  Michal   EDAD: 35 yrs. old

PAÍS: Poland

Subtipo LGMD: Unknown

 

¿A qué edad le diagnosticaron:

I was diagnosed when I was 25 years old.

¿Cuáles fueron sus primeros síntomas?:

When I was a baby, my neck muscles were too weak and I had difficulty holding my head up.  I was delayed and didn’t start to walk until I was 4year old.  I stopped walking at the age of 14.

¿Tiene otros familiares que padezcan LGMD?

NO , I’m the only person in my family who has this disease.

¿Cuáles crees que son los mayores retos de vivir con LGMD?: For me the greatest challenge is that I cannot do some things such as walking, running. stand without help, get dressed, etc.   I tried to control my activities so that I have enough energy to do the activities that I want to do.

¿Cuál es su mayor logro?:

One of the biggest achievement in my life is that I have real great parents, friends, and colleagues who encourage me to live a fairly optimistic life and let me forget about my disability.

¿Cómo le ha influido la LGMD para convertirse en la persona que es hoy?

I have become more insensitive to pain and I’m not fearful of any challenges

¿Qué quiere que el mundo sepa sobre la LGMD?:

I want the world to know that people with LGMD may need more help to live independently – such as a personal care attendant,  improved access to adaptive and assistive equipment as well as medicines.  A cure and treatment is needed to treat all the LGMD patients.

Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:

I think if I were cure tomorrow, I would run and do everything I never could do!

 

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